Hi, and thank you for joining us at EmpowHer women’s health online. Now let’s talk about trigeminal neuralgia, a chronic pain condition that affects the trigeminal, or fifth cranial nerve.
And that’s why Dr. Neil Porter, a neurologist at the University of Maryland Medical Center, is with us. Hi, Dr. Porter.
Dr. Neil Porter:
Hey. What’s going on, Todd?
Todd:
Well, you know, this is an issue that’s popping up in our community women are interested in, so what exactly is trigeminal neuralgia, or TN for those who don’t like to botch it live on the air.
Dr. Porter:
Trigeminal neuralgia is a state, it’s a chronic condition of facial pain, but really the pain isn’t continuous. So it’s really usually characterized by almost like a sharp shooting pain or we call a lancinating pain that’s just very, very brief. Each pain is very brief, but the pains can be usually recurrent, meaning that they can occur multiple times a day, even multiple times a minute, usually triggered by something like certain types of food or certain actions such as chewing or talking or moving the jaw, but it can also be triggered by such things as even having the wind blow across your face.
So it’s very frustrating because sometimes it can be very unpredictable what kind of things are going to trigger the pain or can be frustrating in that doing simple things such as talking and chewing can lead to these very harsh facial pains.
Todd:
Dr. Porter, if I have a pain, let’s say in my left hand, and I push on a spot and I can recreate the pain, with patients that have trigeminal neuralgia, can they recreate it that way?
Dr. Porter:
Technically, absolutely there is, Todd. Again, if they just say tapped on their face, that could actually act as a trigger, and in case of the hand it’s more of, there’s an actual nerve that they are actually probably pressing, and the case is that trigeminal neuralgia, it doesn’t have to be that they have to tap over top of the nerve itself. Unfortunately, it just comes from just tapping anywhere on the skin where the trigeminal nerve serves. That can actually trigger the pain, but such things as touching and tapping–those things are absolutely identified as triggers.
Todd:
Now we have discussed triggers and really the definition and where it’s located, but what causes TN?
Dr. Porter:
Yeah, absolutely. So trigeminal neuralgia is caused and associated with a number of specific conditions, but most often it’s usually the cause is unknown. So in that case, we say that the cause is idiopathic or unknown. But there are other conditions that can be associated with trigeminal neuralgia, so in these instances, we say that the trigeminal neuralgia is secondary to these other conditions.
Probably the most notable condition would be multiple sclerosis, and you can also see it with certain types of tumors, but most of the time that doesn’t mean if you have trigeminal neuralgia, it doesn’t mean you have multiple sclerosis or a tumor. Those would be the things that we would worry about. Under most circumstances there’s nothing else. It’s just what we call idiopathic, and in other words–no known cause, and in those cases, sometimes the trigeminal neuralgia is associated with what we call a vascular loop, an abnormal blood vessel that say is mashing on the nerve that’s triggering, that’s acting as one of the triggers or the enabler for the trigeminal neuralgia such that these other triggers actually lead to the pain.
Todd: Dr. Porter, we discussed earlier what it’s like, but I don’t know if we went in comprehensively and just went over the symptoms. Could you go over the symptoms so a woman who is listening that maybe has been diagnosed, can kind of see how she fits in?
Dr. Porter:
Absolutely, usually as I stated before, again, trigeminal neuralgia is a disorder characterized by facial pain, and it’s recurrent facial pains against sharp, shooting pains. It’s very brief, almost instantaneous pains shooting down into the cheek or shooting down into the jaw, so somewhere along the face, and these are going to be intermittent. Again, it can occur, they are very brief but can occur, as I said, multiple times a day, multiple times a minute, and again, usually triggered by some sort of touch or some sort of stimulus to the face.
So, again, a breeze, a touch to the face, or such actions as chewing or talking. So the pain, we would characterize as a lancinating pain, like a knife-like pain that’s like a sharp shooting pain running down the face. And that’s really the number one characteristic of trigeminal neuralgia, usually not associated with any weakness or any sort of numbness or any other sort of sensory problems. It’s mainly pain.
Todd:
Yeah, well, it sounds like it’s a huge pain, and then how is trigeminal neuralgia diagnosed? If a woman has it or suspects she has it and she goes to the doctor, what kind of tests is the doctor going to do?
Dr. Porter:
Yeah, there’s really no test that’s going to confirm the trigeminal neuralgia component. It’s really what we call a clinical diagnosis, so it’s strictly based upon the description of that the person would have, the description that the person would give would tell a physician oh yes, this sounds like trigeminal neuralgia. And then the exam should be relatively normal so that there shouldn’t be other findings that suggest some other process.
I mean, that would be consistent and then that’s really it. I mean, it’s just based upon the history and the physical. The main testing that we would do would be just to make sure there’s not something else going on, as I mentioned, making sure that there’s no evidence or nothing to suggest multiple sclerosis. Some people would get an MRI of the head, but mostly a physician would be able to make the diagnosis clinically.
Todd:
Any type of physician, or is there a specialist that a woman should see?
Dr. Porter:
So the type of physicians that would probably see a person with the trigeminal neuralgia, a lot of people will see their primary care physicians so internal medicine, family practice, but people who are probably the most expert in trigeminal neuralgia are neurologists. So those would probably be the people who would be most apt to make the diagnosis. I mean, I guess there would be a few neurosurgeons that possibly would see patients, but not usually for the diagnosis. It’s usually for some of the treatment options.
So I’ll say, I mean, I may be somewhat biased because I am a neurologist, so I would say probably the person that would be most reliable in making the diagnosis would be a neurologist…
Todd:
You are so biased.
Dr. Porter:
And, but, I would imagine a number of internists as family physicians, I would presume that made the diagnosis often as well.
Todd:
I think it makes sense for you to look at, if you devote your time to an area or field that you feel would specialize in this, then by all means, don’t feel biased in the process of guiding people in the right direction. Now let’s talk about treatment. A moment ago you touched on it briefly when we were discussing how do you find the right doctor, but how is trigeminal neuralgia treated?
Dr. Porter:
Yeah, again, so it’s a pain disorder. The goal of treatment is really to control the pain, and that can be done in a number of different ways. So the first line treatment I would imagine for just about everyone that has at least trigeminal neuralgia not related to something else, like not related to another condition, the first line of treatment will be medication, and oldest treatment or the treatments most identify with trigeminal neuralgia is a medication called Tegretol. The generic is Carbamazepine, and that works very well for most people with trigeminal neuralgia.
So that’s the accepted first line treatment and if that Carbamazepine doesn’t work, the pretty much accepted second line of treatment is a medication called Baclofen, but that doesn’t work nearly as well as the Carbamazepine. And then if those two treatments fail, then there are a number of other medications that people use for nerve pain in general.
Now trigeminal neuralgia is a very specific nerve pain syndrome, and we know those medications work very well, but, there’s other nerve pain syndromes that we use, other medications for such as antidepressant medications and seizure medications, but all of these medications are specifically medications that we use for what’s called neuropathic pain or nerve pain. And so we would use one of those agents as backup, but essentially at some point if these different agents don’t work, then emphasis switches to more, what we call surgical management or non-pharmacological management. And in that case, it will generally be a neurosurgeon who could do different types of maneuvers to try to affect the nerve directly and help suppress the pain. And the type of measures there are, and generally these will be neurosurgeons, I guess rarely an anesthesiologist but in general, a neurosurgeon would try to take a needle and actually directly inject the trigeminal nerve with either an alcohol type of product, almost sort of injure that nerve. So it’s called phenol, so it would be almost to paralyze that nerve to some extent, or a medication called glycerol, which is oil. So you would try to inject the nerve with either oil or alcohol to try to suppress the normal nerve function and hopefully suppress the pain at the same time.
The other types of treatments in addition to the injections are, as I mentioned, in some of these cases are the idiopathic, meaning no known cause that’s obvious. Sometimes there is an abnormal blood vessel or the belief is that there is an abnormal blood vessel mashing on the nerve, and in those cases, and in some cases I should say, people do have surgery where the surgeon will go in and actually cut the blood vessel and try to move it from around the area of the nerve or even place a little metal wafer in between the nerve and the blood vessel to try to insulate the nerve. And it’s a drastic measure, but again, for some people with very, very severe pain, it’s clearly worth it for them. So that would be an, what we call open neurosurgical procedure.
And then the latest treatment that people are now advocating which isn’t as drastic as neurosurgery is called radiosurgery, and they do that here at the University of Maryland where there is a device called the Gamma Knife. So there’s really no knife; what it is, is focused beams of radiation that all can be focused into one pinpoint spot. And what the radiosurgeons would then do, either neurosurgeon or a radiation oncologist or both together, would target the trigeminal nerve with this radiation and again try to injure the bit to try to decrease the nerve function but also to decrease the pain at the same time, the pain generators at the same time, and then hopefully relieve the pain. And that does works very well in these, what we call refractory cases, the cases that don’t respond to medication. But pretty much as it’s accepted that medication is the first line of treatment, and then as backup, people do try these injections. Some people get surgery, and then other people get radiosurgery.
Todd:
Radiosurgery to treat TN, is that fairly new?
Dr. Porter:
It is relatively new but it’s been around, it’s actually been used for years now, but it’s newer than all the rest of the treatments. It’s newer than the medications; it’s newer than the injections with the glycerol and phenol, and it’s newer than the open surgery that to move the blood vessel. But still at this point there’s been very good experience at centers like University of Maryland and a number of other centers around the country.
So at this point, I wouldn’t say it’s experimental and we do have a good number of cases and collections of case series that really do show good efficacy, at least in the near term. And again, we will have to see over time, say like long-term follow-up, we are talking 20, 30, 40, 50 years. We will have to see how over time how well their radiosurgery stacks up with some of these other treatments.
Todd:
Dr. Porter, I was speaking with Dr. Maoshing Ni who is a Chinese medicine doctor. I asked him about trigeminal neuralgia and traditional Chinese medicine, and he said for generations Chinese medicine has been treating TN. Can acupuncture help patients with trigeminal neuralgia?
Dr. Porter:
Yeah, I think that’s an excellent question. I mean acupuncture, and again, in the West we are now becoming much more comfortable with acupuncture, and there’s even been studied at a number of trials conducted through the National Institutes of Health or NIH, but again, acupuncture in the right hands, with a person who is expert in the technique, again, is very safe. And I haven’t seen any studies specifically looking at acupuncture and trigeminal neuralgia, but acupuncture, clearly we are becoming much more comfortable with it being used with all sorts of pain syndromes.
So I wouldn’t be surprised if it does help with trigeminal neuralgia. So for individuals, I mean, I can’t recommend it from a scientific basis, but on a personal basis I think it’s a fine, especially if the medications, if a simple treatment like medications don’t help or for people who just don’t like taking medication. I think it’s a great, what we would call now alternative medication or alternative treatment plan. But I think it’s definitely valid and definitely worthwhile.
Again, I think the major point that would be is make sure that the person is experienced and is well-trained, but other than that, I wouldn’t see any reason not to try acupuncture for anybody that has or who is significantly impaired by their pain.
Todd:
Dr. Porter, is there any new trigeminal neuralgia research being done out there that our listeners should know about?
Dr. Porter:
I think that’s another good question. I can’t say off hand which centers are doing research. Again, a lot of the neurosurgical experience, a lot of the newer techniques really have been promoted through the University of Pittsburgh, so I think that would be one of the places to look as far as the surgical techniques. But as far as medication, most of the work really is being done in what we call like clinical trials of regular medications.
I don’t know of any specific centers, but probably the place to look would be a great website overall when you are dealing with neurological conditions, would be the National Institutes of Health. They have, there’s something called the National Institutes of Neurologic Disease and Stroke--NINDS, but if you just go to nih.gov they can get you to the Neurological Institute, and usually they will actually have a listing of like at least of clinical trials. But as far as like research other than clinical trials, again, I guess the question would be is if there’s a patient advocacy group that I don’t know of, that might be a place to look. But the NIH is always a great place to start looking and then seeing if they have any additional leads.
Todd:
That website that Dr. Porter just mentioned, I have already Googled, found. I am going to put the link up for those of you who would like to find the research that’s available. Dr. Porter, before we say good-bye and thank you, are there any conditions that are commonly confused with TN–trigeminal neuralgia?
Dr. Porter:
Yeah, absolutely there is, Todd. So I think that this diagnosis that’s probably most frustrating for patients and is also somewhat frustrating for physicians as well, is a condition known as, that we just term atypical facial pain, meaning that not all facial pain is trigeminal neuralgia because it does have certain characteristics. And so we see people coming in with facial pain, maybe in the same type of distribution as trigeminal neuralgia, but really not fitting that well with the diagnosis. Then the physicians or at least neurologists are going to be apt to use the term ”atypical facial pain.”
Problem is a lot of times we may still try to use some of the same medications, but in those cases I would think we would be, most neurologists and I think most neurosurgeons would be less comfortable recommending neurosurgery or even radiosurgery. So it’s more frustrating for the patients because a lot of times the treatment options are relatively more limited.
It’s frustrating for the physician because this is a category of condition that’s very nebulous. So patients have to kind of realize that if their physician is saying that they don’t that it’s trigeminal neuralgia, it’s really for a good reason, and it really does have some treatment implications, and even though it may make life a little bit more difficult for everybody involved, I have a saying: “It seldom helps to solve the wrong problem.”
So if somebody does not have trigeminal neuralgia, they probably shouldn’t get surgery to treat the trigeminal neuralgia because they don’t have it in the first place, and it’s probably not going to do them any good. And they may actually end up worse. So again, that’s probably the most important other diagnosis always to consider and for the patients for therefore be aware of.
Todd:
Well, he is Dr. Neil Porter; he is a neurologist at the University of Maryland Medical Center. If you want to find more information about Dr. Porter, the way I would recommend doing it is to go to the University of Maryland Medical Center website, that’s umm.edu, and type in “Dr. Neil C. Porter,” and you’ll pull up his profile. He has also got a great 30-minute audio interview on that site that you can listen to for more information.
Dr. Porter, thank you so much for helping us empower women.
Dr. Porter:
Thanks Todd, anytime.